Alzheimer’s Disease and Related Disorders Commission
DEMENTIA STATE PLAN:
Virginia’s Response to the Needs of
Individuals with Dementia
and their Caregivers
Table of Contents
Letter to the Governor and General Assembly , 3
Overview of Goals, 4
What is Dementia?
Definition and Causes, 5
Symptoms of Alzheimer’s Disease, 5
Diagnosis of Alzheimer’s Disease, 6
Causes of Alzheimer’s Disease, 7
Risk Factors, 8
Treatment , 10
Recommendations
I. Coordinate Quality Dementia Services in the Commonwealth to Ensure Dementia
Capability, 11
II. Use Dementia Related Data to Improve Public Health, 13
III. Increase Awareness and Create Dementia Specific Training, 15
IV. Provide Access to Quality Coordinated Care for Individuals with Dementia in the
Most Integrated Setting, 17
V. Expand Resources for Dementia Specific Translational Research and EvidenceBased Practices , 18
Appendices
How We Got Here, 20
Statistical Sheet, 21
Resources, 22
Glossary, 25
2
COMMONWEALTH OF VIRGINIA
Alzheimer’s Disease and Related Disorders Commission
Patricia W. Slattum, Pharm.D,
Ph.D., Chair
December 7, 2011
Martha Watkins, Vice Chair
Charlotte Arbogast
The Honorable Robert F. McDonnell and Members of the Virginia General Assembly,
Vivian Bagby, RN, MS
Kae H. Chung, Ph.D.
Constance L. Coogle, Ph.D.
Julia T. Dillon
W. Thomas Hudson
Maxcine C. Maxfield, Ph.D.
Robert Schaefer
Lynne Seward
Faith C. Shartzer, RN
Courtney S. Tierney, MSW
George Vradenburg
Kevin P. Walsh, DC
The Alzheimer’s Disease and Related Disorders Commission is pleased to present the
Dementia State Plan: Virginia’s Response to the Needs of Individuals with Dementia
and their Caregivers. The Commission has worked diligently to develop this plan
through collaboration with researchers and clinicians and through a statewide series of
public hearings providing valuable input from individuals with dementia and family
caregivers. These hearings were facilitated by organizations such as the four chapters of
the Alzheimer’s Association serving Virginia, and an online public comment period was
publicized through a network of health and trade organizations.
Approximately one in eight older adults is affected with Alzheimer’s disease, the fifth
leading cause of death, and the number affected is expected to triple by 2050. Planning
now is essential. The five goals of the plan provide a comprehensive vision to:
1. Coordinate Quality Dementia Services to Ensure Dementia Capability
2. Use Dementia Related Data to Improve Public Health
3. Increase Awareness and Create Dementia Specific Training
4. Provide Access to Quality Coordinated Care in the Most Integrated Setting
5. Expand Resources for Translational Research and Evidence-Based Practices
The Commission has developed associated recommendations and formed workgroups to
facilitate realization of each goal. The Commission will evaluate and track progress on
these recommendations and looks forward to reporting accomplishments in the future.
www.alzpossible.org
vda.virginia.gov/alzcommission.asp
While achieving this vision will likely require additional resources, progress can also be
made through innovation and collaboration. If you would like to share your thoughts
and ideas with the Commission, please contact any of the Commission members or the
staff at the Virginia Department for the Aging.
Virginia Department for the Aging
1610 Forest Avenue, Suite 100
Sincerely,
Richmond, Virginia 23229
[email protected]
(804) 662-9333
Fax (804) 662-7035
Patricia W. Slattum, Chair
Alzheimer’s Disease and Related Disorders Commission
Overview of Goals
GOAL I:
Coordinate Quality Dementia Services in the Commonwealth
to Ensure Dementia Capability
A. Create a dementia services coordinator.
B. Expand availability and access of dementia capable Medicaid and other state-level
services.
C. Create a statewide network of memory disorders clinics to assess and treat persons with
dementia.
GOAL II:
Use Dementia Related Data to Improve Public Health
Outcomes
A: Collect and monitor data related to dementia’s impact on the people of the
Commonwealth.
B: Remove barriers for community integration for persons with dementia.
C: Collaborate with related public health efforts to encourage possible risk-reduction
strategies.
GOAL III:
Increase Awareness and Create Dementia Specific Training
A: Provide standardized dementia specific training to individuals in the health-related field
and require demonstrated competency.
B: Provide dementia specific training to professional first responders, financial services
personnel, and the legal profession.
C: Link caregivers, family members and individuals with dementia to information about
dementia services.
GOAL IV:
Provide Access to Quality Coordinated Care for Individuals
with Dementia in the Most Integrated Setting
A: Advocate for and increase awareness of integrated systems of care coordination that
effectively support improved health outcomes for individuals with dementias and their
families and loved ones.
B: Explore tax incentives for family caregiving, respite care, long term care insurance
purchases, locator devices, and additional long term care services.
C: Advocate for accessible transportation systems.
GOAL V:
Expand Resources for Dementia Specific Translational
Research and Evidence-Based Practices
A: Increase funding for the Alzheimer’s and Related Diseases Research Award Fund.
B: Provide support to researchers across the Commonwealth through data sources and
networking opportunities.
C: Promote research participation in Virginia.
4
What Is Dementia?
DEFINITION AND CAUSES
When making a diagnosis of dementia, physicians commonly refer to the criteria given in the Diagnostic and
Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV). To meet DSM-IV criteria for dementia, the
following are required:

Symptoms must include decline in memory and in at least one of the following cognitive abilities:
1. Ability to generate coherent speech or understand spoken or written language;
2. Ability to recognize or identify objects, assuming intact sensory function;
3. Ability to execute motor activities, assuming intact motor abilities, sensory function and comprehension
of the required task; and
4. Ability to think abstractly, make sound judgments and plan and carry out complex tasks.

The decline in cognitive abilities must be severe enough to interfere with daily life.
It is important for a physician to determine the cause of memory loss or other dementia-like symptoms. Some
symptoms can be reversed if they are caused by conditions such as depression, delirium, drug interaction,
thyroid problems, excess use of alcohol or certain vitamin deficiencies. If not, a physician must conduct
further assessments to identify the disorder, most commonly Alzheimer’s Disease, that is causing symptoms. Different disorders are associated with distinct symptom patterns and distinguishing microscopic brain
abnormalities. These disorders include, but are not limited to, primary neurodegenerative dementias, such
as dementia with Lewy Bodies and other Parkinsonian syndromes with dementia, vascular dementia, and
frontotemporal dementias including Pick's Disease.
Although Alzheimer’s disease is the most common type of dementia, increasing evidence from long-term
observational and autopsy studies indicates that many people with dementia have brain abnormalities associated with more than one type of dementia.
SYMPTOMS of Alzheimer’s Disease
The warning signs of Alzheimer’s disease are illustrated on the next page.
Individuals progress from mild Alzheimer’s disease to moderate and severe disease at different rates. As the
disease progresses, the individual’s cognitive and functional abilities decline.
In advanced Alzheimer’s, people need help with basic activities of daily living, such as bathing, dressing, using the bathroom and eating.
Those in the final stages of the disease lose their ability to communicate, fail to recognize loved ones and
become bed-bound and reliant on around-the-clock care.
Adapted from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
5
What Is Dementia? (cont.)
In late-stage Alzheimer’s disease, the
inability to move around can make a
person more vulnerable to infections,
including pneumonia (infection of the
lungs). Alzheimer’s disease is ultimately fatal, and Alzheimer-related
pneumonia is often the cause.
Although families generally prefer to
keep the person with Alzheimer’s at
home as long as appropriate, most
people with the disease eventually
move into a nursing home or another
residence where around-the-clock
professional care is available.
DIAGNOSIS of
Alzheimer’s Disease
A diagnosis of Alzheimer’s disease is
most commonly made by an individual’s primary care physician. The physician obtains a medical and family history, including psychiatric history and history of cognitive and behavioral changes. Ideally, a family member or other individual close to the patient is available to provide input. The
physician also conducts cognitive tests and physical and neurologic examinations. In addition, the patient
may undergo magnetic resonance imaging (MRI) scans to identify brain changes that have occurred so the
physician can rule out other possible causes of cognitive decline.
Adapted from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
6
What Is Dementia? (cont.)
CAUSES of Alzheimer’s Disease
Alzheimer’s disease was first identified more than 100 years ago, but research into its symptoms, causes,
risk factors and treatment has only gained momentum in the last 30 years. While research has revealed a
great deal about Alzheimer’s, with the exception of certain inherited forms of the disease, the cause or causes of Alzheimer’s disease remain unknown.
Among the brain changes believed to contribute to the development of Alzheimer’s are the accumulation of
the protein beta-amyloid outside nerve cells (neurons) in the brain and the accumulation of the protein tau
inside neurons. A healthy adult brain has 100 billion neurons, each with long, branching extensions. These
long, branching extensions enable individual neurons to form specialized connections with other neurons. At
these connections, called synapses, information flows in tiny chemical pulses released by one neuron and
detected by the receiving neuron. The brain contains 100 trillion synapses. They allow signals to travel rapidly and constantly through the brain’s circuits, creating the cellular basis of memories, thoughts, sensations,
emotions, movements and skills.
In Alzheimer’s disease, information transfer at synapses begins to fail, the number of synapses declines and
neurons eventually die. The accumulation of beta-amyloid outside these synapses is believed to interfere
with neuron-to-neuron communication and contribute to cell death. Inside the neuron, abnormally high levels
of tau form tangles that block the transport of nutrients and other essential molecules throughout the cell.
This is also believed to contribute to cell death. Brains with advanced Alzheimer’s show dramatic shrinkage
from cell loss and widespread debris from dead and dying neurons.
One known cause of Alzheimer’s is genetic mutation. A small percentage of Alzheimer’s disease cases, probably less than 1 percent, are caused by rare genetic mutations. These mutations involve the gene for the amyloid precursor protein on chromosome 21, the gene for the presenilin 1 protein on chromosome 14 and the
gene for the presenilin 2 protein on chromosome 1. Inheriting any of these genetic mutations guarantees that
an individual will develop Alzheimer’s disease. In such individuals, the disease tends to develop before age
65, sometimes in individuals as young as 30. These people are said to have “familial” Alzheimer’s disease.
Adapted from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
7
What Is Dementia? (cont.)
RISK FACTORS
The greatest risk factor for Alzheimer’s disease is advancing age, but Alzheimer’s is not a normal part of aging. Most Americans with Alzheimer’s disease are aged 65 or older. These individuals are said to have lateonset Alzheimer’s disease. However, people younger than age 65 can also develop the disease. When Alzheimer’s occurs in a person younger than 65 who does not have familial Alzheimer’s disease, it is referred to
as “younger-onset” (formerly known as “early-onset” Alzheimer’s). Advancing age is not the only risk factor
for Alzheimer’s disease. The following sections describe other prominent risk factors.
Family
History
Family history is another risk factor for
Alzheimer’s disease. Individuals with a
parent, brother or sister with Alzheimer’s are more likely to develop the
disease than those who do not have a
first-degree relative with Alzheimer’s.
Those with more than one first-degree
relative with Alzheimer’s are at even
higher risk of developing the disease.
When diseases run in families, heredity
(genetics), environmental factors or
both may play a role.
A genetic factor in late-onset Alzheimer’s disease is Apolipoprotein E-e4
(APOE-e4). APOE-e4 is one of three
common forms (e2, e3 and e4) of the
Mild
Cognitive
Impairment
(MCI)
Another established risk factor for Alzheimer’s disease is MCI, a condition in
which a person has problems with
memory, language or another essential
cognitive ability that are severe enough
to be noticeable to others and show up
on cognitive tests, but not severe
enough to interfere with daily life. Studies indicate that as many as 10 to 20
percent of people aged 65 and older
have MCI. People whose MCI symptoms cause them enough concern to
visit a physician appear to have a high-
APOE gene, which provides the blueprint for a protein that carries cholesterol in the bloodstream.
Everyone inherits one form of the APOE gene from each parent. Those who
inherit one APOE-e4 gene have increased risk of developing Alzheimer’s
disease and of developing it at an earlier age than those who inherit the e2 or
e3 forms of the APOE gene. Those
who inherit two APOE-e4 genes have
an even higher risk. However, inheriting one or two copies of the gene does
not guarantee that the individual will
develop Alzheimer’s.
er risk of developing dementia. It’s estimated that as many as 15 percent of
these individuals progress from MCI to
dementia each year. From this estimate, nearly half of all people who
have visited a physician about MCI
symptoms will develop dementia in
three or four years. It is unclear why
some people with MCI develop dementia while others do not. MCI may in
some cases represent a transitional
state between normal aging and the
earliest symptoms of Alzheimer’s.
Adapted from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
8
What Is Dementia? (cont.)
Cardiovascular
Disease Risk
Factors
A growing body of evidence suggests that the health of the brain is
closely linked to the overall health
of the heart and blood vessels.
The brain is nourished by one of
the body’s richest networks of
blood vessels. A healthy heart
helps ensure that enough blood is
pumped through these blood vessels, and healthy blood vessels
help ensure that the brain is supplied with the oxygen- and nutrient
-rich blood it needs to function normally. Some data indicate that cardiovascular disease risk factors,
such
as
high
cholesterol
(especially in midlife), Type 2 diabetes, high blood pressure
(especially in midlife), physical inactivity, smoking and obesity, are
associated with a higher risk of
developing Alzheimer’s and other
dementias. Unlike genetic risk factors, many of these cardiovascular
disease risk factors are modifiable
— that is, they can be changed to
decrease the likelihood of developing cardiovascular disease and,
possibly, the cognitive decline associated with Alzheimer’s and other forms of dementia. More limited
data suggest that other modifiable
factors, such as remaining mentally active and consuming a diet low
in saturated fats and rich in vegetables, may support brain health.
Head Trauma
and Traumatic
Brain Injury
Moderate and severe head trauma, head injury and traumatic
brain injury are associated with an
increased risk of Alzheimer’s disease and dementia. If the head
injury results in loss of consciousness or post-traumatic amnesia
lasting more than 30 minutes, the
injury is considered moderate; if
either of these lasts more than 24
hours, the injury is considered severe. Data indicate that moderate
head injuries are associated with
twice the risk of developing Alzheimer’s compared with no head injuries, and severe head injuries are
associated with 4.5 times the risk.
These increased risks have not
been shown for individuals experi-
encing mild head injury or any
number of common mishaps such
as bumping one’s head while exiting a car. Groups that experience
repeated head injuries, such as
boxers, football players and combat veterans, may be at increased
risk of dementia, late-life cognitive
impairment and evidence of tau
tangles (a hallmark of Alzheimer’s)
at autopsy. Some studies suggest
that APOE-e4 carriers who experience moderate or severe head
injury are at increased risk of developing Alzheimer’s compared
with APOE-e4 carriers who do not
have a history of moderate or severe head injury.
Adapted from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
9
What Is Dementia? (cont.)
TREATMENT
No treatment is available to slow or stop the deterioration of brain cells in Alzheimer’s disease. The U.S.
Food and Drug Administration has approved five drugs that temporarily slow worsening of symptoms for
about six to 12 months. They are effective for only about half of the individuals who take them. However, researchers around the world are studying numerous treatment strategies that may have the potential to
change the course of the disease.
Approximately 75 to 100 experimental therapies aimed at slowing or stopping the progression of Alzheimer’s
are in clinical testing in human volunteers. Researchers believe that treatments to slow or stop the progression of Alzheimer’s disease and preserve brain function will be most effective when administered early in the
course of the disease. The brain changes in individuals with Alzheimer’s are thought to begin 10 years or
more before such symptoms as memory loss appear, and this may be the period during which future Alzheimer drugs will first be given. Much research in recent years has focused on identifying biomarkers that will
aid in early detection and tell physicians which patients should receive treatment during these very beginning
stages of Alzheimer’s. (A biomarker is a naturally occurring, measurable substance or condition that reliably
indicates the presence or absence of disease or the risk of later developing a disease; for example, blood
glucose levels are a biomarker of diabetes, and cholesterol levels are a biomarker of cardiovascular disease
risk.)
To aid in early detection and in diagnosis of Alzheimer’s disease from its earliest signs to its eventual impact
on mental and physical function, in 2009 the National Institute on Aging and the Alzheimer’s Association convened three workgroups to explore the need for new diagnostic criteria that better reflect the full continuum
of the disease. In 2010, these workgroups proposed recommendations to update the diagnostic criteria for
Alzheimer’s dementia and MCI. The workgroup recommendations also include criteria for “preclinical Alzheimer’s disease,” a new diagnostic category representing the earliest changes that occur even before symptoms such as memory loss or the symptoms associated with MCI. All of the recommendations incorporate
the use of biomarkers for diagnosis. Among the biomarkers being considered are brain volume, level of glucose metabolism in the brain, presence of beta-amyloid in the brain and levels of beta-amyloid and tau in
cerebrospinal fluid. These recommendations would currently be used only in research settings. Their accuracy must be confirmed in research studies before they can be used in clinical practice, such as during a visit
to a physician.
Despite the current lack of disease-modifying therapies, studies have consistently shown that active medical
management of Alzheimer’s and other dementias can significantly improve quality of life through all stages of
the disease for individuals with Alzheimer’s and their caregivers. Active management includes
(1) appropriate use of available treatment options,
(2) effective integration of coexisting conditions into the treatment plan,
(3) coordination of care among physicians, other healthcare professionals and lay caregivers and
(4) use of activity and support groups, adult day care programs and supportive services such as counseling.
Adapted from: Alzheimer’s Association, 2011 Alzheimer’s Disease Facts and Figures, Alzheimer’s& Dementia, Volume 7, Issue 2.
10
Goal I: Recommendations
GOAL I:
Coordinate
Quality
Dementia
Services in the
Commonwealth
to Ensure
Dementia
Capability
The system of services provided by the Commonwealth is not designed to serve
persons with dementia. Each department within Health and Human Resources created, slowly over time, their own programs for long-term care including dementia
related services and supports, but without any clear oversight or coordination of policy goals and implementation. Virginia needs to make a comprehensive review of
these programs in order to ensure better services and more efficient use of state
funds.
The Dementia Services Coordinator described in this plan would review the existing
programs and work with the agencies to create a dementia capable service delivery
system. The coordinator would identify gaps in Medicaid (and other state services)
and reduce duplication of existing services.
In order to get the maximum benefit from a better coordinated system, Virginians
will need access to early detection and treatment of dementia. Memory Disorders
Clinics that use an interdisciplinary team approach to assess and treat persons with
dementia would provide the citizens of the Commonwealth with screening services
and treatment. Early identification and aggressive treatment of Alzheimer’s and other related dementias offer the greatest opportunity to decrease cost and progression of the disease.
A. Create a dementia services coordinator
1. Create a position and obtain specific funding to hire a full time Dementia
Services Coordinator (DSC) to coordinate the services provided to persons with Alzheimer’s disease and Related Dementia working in conjunction with the Alzheimer’s Commission.
a. The job responsibilities should include policy, research and coordination of services.
b. The DSC should disseminate information on services and related
activities for individuals with Alzheimer’s disease and related dementias to the medical and healthcare community, academic
community, primary family caregivers, advocacy associations
and general public.
c. The DSC will establish a strategy to link and coordinate services
and activities of State agencies, other service providers, advocacy groups and other entities throughout the State such as emergency personnel, police, universities and attorneys and other
staff associated with the legal system. This could include partnerships with the Alzheimer’s Association, the Area Agencies on
Aging, and other groups invested in dementia research and care.
d. The DSC will coordinate and provide support for Commission
activities.
11
Goal I: Recommendations
e. The DSC will oversee and promote services for all stages and
types of dementia including younger onset.
f. The DSC will ensure that the Aging and Disability Resource Centers are dementia capable.
B. Expand availability and access of dementia capable Medicaid and other
state-level services
1. Increase respite services for caregivers of people with dementia
2. Restore funding to maintain the Virginia Caregivers Grant and the Virginia Respite Care Grant
3. Revise the current definition, eligibility and service requirements for the
provision of respite to make the above mentioned programs more flexible.
4. Expand the accessibility and availability of PACE (Program of the Allinclusive Care for the Elderly) and Adult Day Services, the Elderly or Disabled Consumer Direction (EDCD) waiver, and hospice programs.
5. Expand the Medicaid waiver specific to Alzheimer’s disease and related
dementias to include other home and community based services.
6. Explore changes needed to ensure Medicaid eligibility for younger onset
(formerly known as “early onset”) dementia.
7. Increase the payment rate of the Auxiliary Grant to cover the actual cost
of care in an assisted living facility.
8. Expand the use of Virginia’s Long-Term Care Partnership Insurance Program.
9. Increase funding for Home and Community Based Services.
10. Review the overlapping requirements for the licensing of residential facilities,
assisted living facilities, and skilled nursing facilities to further clarify the different levels of services.
11. Increase the funding for the Virginia Long-term Care Ombudsman Program
to meet the required one ombudsman for every 2000 long-term care beds.
12. Review all state-funded services to ensure “dementia capable” approaches
and policies, based on principles derived from the Person-Centered Care
and Culture Change movements.
C. Create a statewide network of memory disorders clinics to assess and
treat persons with dementia
1. Create a network of memory disorder clinics that use an interdisciplinary
team approach to assess and treat persons with dementia.
12
Goal II: Recommendations
GOAL II:
Use Dementia
Related Data to
Improve Public
Health
Public health data collection is essential to understand the scope and extent of
dementia impact on Virginians. State agencies such as DSS, DMAS, DBHDS,
and VDA do collect some general information related to specific programs, but
the information is not aggregated or sorted by the Commonwealth to inform
state policy decisions related to dementia care. Currently the Commonwealth
has no effective statewide tool to regularly gather and analyze information on
dementia disease diagnoses, risk factors or disease patterns. This lack of data
leads to a fragmented service delivery system that does not meet the needs of
persons with Alzheimer’s disease.
The Dementia Services Coordinator described in this plan would review existing data and create a system to incorporate that data into a meaningful tool to
inform state policy makers. A careful study of the data would allow the Commonwealth to identify barriers to serving more people with dementia in their
homes and ultimately make recommendations that will reduce the reliance on
expensive nursing home care thus allowing Virginia to meet its community integration goals on the Olmstead v. L.C. court decision. Additionally, the data can
be used to target risk reduction strategies and reduce the overall cost of dementia on Virginia.
A. Collect and monitor data related to dementia’s impact on the people
of the Commonwealth.
1. Require the DSC to develop, implement and coordinate a statewide data collection system (including Behavioral Risk Factor
Surveillance
System
data)
through
the
VACAPI
(Virginia Alzheimer’s Commission AlzPossible Initiative) website
(www.alzpossible.org). The website could provide a clearinghouse
of links to the state agencies or groups with relevant, up-to-date,
and available data on dementia.
2. The DSC should collect and monitor data with the following themes
in mind:
a. The prevalence of dementia related diseases across the
Commonwealth.
b. The prevalence of dementia related diseases by city and
county, rural communities and ethnic and racial minorities.
c. The prevalence of younger onset (formerly known as “early
onset”) dementia related diseases across the Commonwealth.
d. The prevalence of inpatient geriatric psychiatry beds.
e. The prevalence of dementia related diseases among incar13
Goal II: Recommendations
cerated populations
f.
The availability of geriatric services and specialists.
g. The availability of dementia related services and supports.
h. The availability of assessment services for Alzheimer’s and dementia.
i.
The number and location of Virginians who are currently providing care in their home to a family member with Alzheimer’s disease and dementia.
j.
The cost of caring for a person with dementia.
B. Remove barriers for community integration for persons with dementia
1. With appropriate stakeholders, develop, collect and implement a protocol of appropriate placement options based on the stages of Alzheimer’s
and dementia related diseases, and available community resources.
C. Collaborate with related public health efforts to encourage possible riskreduction strategies
1.
Use the Behavioral Risk Factor Surveillance System (BRFSS) to collect health outcomes data for persons with Alzheimer’s disease and
dementia in Virginia.
2.
Collaborate with related public health efforts (e.g. diet, exercise, comorbid conditions, etc.) to encourage possible risk-reduction strategies.
14
Goal III: Recommendations
GOAL III:
Increase
Awareness
and Create
Dementia
Specific
Training
Many families can anticipate up to a 20 year progression when faced with a dementia diagnosis, encountering a wide variety of care providers along the way. Despite
the current demographic predictions, there is a startling dearth of training for care
providers across all disciplines, professional and licensure levels regarding detection, diagnosis, care, treatment and general best practices in dementia. The dementia knowledge gap leaves patients and families at risk. Families are left to fend for
themselves.
Dementia specific training is essential to ensure quality care across the continuum
of care. Coordination and expansion of existing training models is key to ensuring a
dementia-ready workforce.
A. Provide standardized dementia specific training to individuals in the
health-related field and require demonstrated competency
a. Develop or collect and deliver dementia specific training for physicians and encourage practical experience in geriatrics for medical
students.
b. Develop or collect and deliver dementia specific training for professionals working in the health professions, such as gerontologists,
physical therapists, occupational therapists, nurses, pharmacists,
rehabilitation counselors, social workers, etc.
c. Emphasize the unique role and knowledge of the informal or family
caregiver and encourage physicians to utilize their expertise.
d. Develop or collect and deliver evidence-based training curriculum
and implementation strategy for the Department of Behavioral
Health and Developmental Services and the Community Services
Boards.
e. Develop or collect and deliver an evidence-based training curriculum
and implementation strategies for Long Term Care facilities and
home and community based providers.
f.
Require mandatory dementia specific training for emergency room
staff including nurses, physicians and related services technicians
such as radiology.
g. Incorporate evidence-based dementia practices into all existing
training offered through the Department of Social Services, the Department for the Aging, the Department for Behavioral Health and
Disability Services, the Department of Rehabilitation Services, and
their contractors.
15
Goal III: Recommendations
B. Provide dementia specific training to professional first responders (police,
fire, EMS and Search & Rescue personnel), financial services personnel,
and the legal profession
1. Develop, collect and implement training on dementia related disorders for
various stakeholders.
a. Continue to develop relationships and implement training with state
and local first responders (police, fire, EMS and Search & Rescue personnel) and emergency personnel.
b. Continue work with first responders (police, fire, EMS and Search &
Rescue personnel) to ensure a coordinated protocol for swift and appropriate action upon report of a missing adult with dementia.
c. Develop, collect and implement dementia specific training for financial
services personnel.
d. Develop, collect and implement dementia specific training for judges,
magistrates, prosecutors, and general practice attorneys.
e. Increase training for Department of Social Services adult protective
services workers on Alzheimer’s disease and dementia.
f.
Develop or collect and implement dementia specific training for Department of Corrections personnel
2. Develop or collect and deliver a portable certification program for paraprofessional direct caregivers with standardized content designed to enhance their understanding of memory impairment and their performance in
caring for individuals with Alzheimer’s and related dementias.
C. Link caregivers, family members and individuals with dementia to information about dementia services
1. Train and link family and informal caregivers to information and education
about dementia and the caregiving process (through coordination with the
Alzheimer's Association, Area Agencies on Aging, and similar organizations and agencies). This should provide the caregivers information about
dementia as well as information on how caregivers can stay healthy, organize the various legal issues associated with a loved one’s dementia
diagnosis (such as Advanced Medical Directives, Power of Attorneys,
etc.), and how caregivers can locate and make use of resources for respite care services. This could be accomplished through a combination of
efforts, including use of the VACAPI (Virginia Alzheimer’s Commission
AlzPossible Initiative) website.
2. Develop or collect and deliver a strategy to reach out to rural communities,
racial and ethnic minorities, and faith-based communities. This could include a combined effort with the Alzheimer’s Association to increase the
availability and use of education materials tailored to these groups.
3. With appropriate stakeholders, develop or collect and implement evidence
-based protocol for appropriate interaction with individuals with Alzheimer’s and related dementias and their family and loved ones.
16
Goal IV: Recommendations
GOAL IV:
Provide
Access to
Quality
Coordinated
Care for
Individuals
with Dementia
in the Most
Integrated
Setting
Currently 80-85% of care is provided by family members. It is safe to say that
our current health care system is dependent on family care. While caregivers
express commitment and devotion to their loved ones, the emotional and physical strain can be devastating. It is well documented that the person with dementia often outlives their caregiver as the caregiver’s physical and emotional
needs take a back seat to daily demands. In addition, caregiving often takes a
significant financial toll on families as well as industry due to lost wages, poor
work performance, and absenteeism. Adequate support for families can preserve caregiver physical, emotional, and financial health, improve care of persons with dementia, postpone costly residential placement, and maintain caregivers as valuable contributors to the workforce.
The Commonwealth must support, fund, and expand availability of professional
care coordination to help families navigate our complex eldercare system. In
order to survive, families need dementia friendly solutions for their safety, services, and behavioral concerns, including: assessment and diagnosis, counseling and support services, care management, respite care, assistive technologies and home modification, transportation, and payment options including long
term care insurance.
A. Advocate for and increase awareness of integrated systems of care
coordination that effectively support improved health outcomes for
individuals with dementias and their families and loved ones.
1. With the appropriate stakeholders, support a pilot demonstration
project to improve transitional care and address the problem of lack
of placement and facility discharge for residents exhibiting disruptive behavior.
2. Foster University-Community partnerships to address community
needs and promote mutually beneficial participatory research opportunities.
B. Explore tax incentives for family caregiving, respite care, long term
care insurance purchases, locator devices, and additional long term
care services.
1. Offer tax credits for families for the purchase of locator devices and
other related expenses.
C. Advocate for accessible transportation systems.
17
Goal V: Recommendations
GOAL V:
Expand
Resources for
Dementia
Specific
Translational
Research and
EvidenceBased
Practices
Key to Virginia’s response to dementia will be continued support for research aimed
at disease modification, prevention, and elimination, as well as the translational,
evidence-based, and behavioral research developments that improve the quality of
life and care for those impacted by dementia. Through a combination of partnerships spanning the scientific, academic, public, and private sector communities, Virginia must encourage research participation at all levels of service delivery while
also facilitating information sharing and networking opportunities for researchers.
With increased funding for the Alzheimer’s and Related Disease Research Award
Fund and support for the progression of evidence-informed practices to evidencebased practices, Virginia will ensure that it is prepared to meet the research needs
of its residents.
A. Increase funding for the Alzheimer’s and Related Diseases Research
Award Fund.
1. Increase funding for the Alzheimer’s and Related Diseases Research
Award Fund.
a. Restore and expand funding to increase investment in research
on the biomedical and psychosocial aspects of dementia, including cell biology, caregiving, and animal modeling dementia prevention, modification, treatment cures, and best practices for
dementia.
b. Disseminate research findings, especially translational research
findings, on the VACAPI (Virginia Alzheimer’s Commission
AlzPossible Initiative) website (www.alzpossible.org).
B. Provide support to researchers across the Commonwealth through data
sources and networking opportunities.
1. Provide networking opportunities for researchers in Virginia.
a. Disseminate funding opportunities.
b. Use VACAPI website as a forum to link researchers interested in Alzheimer’s disease research.
c. Use a webinar, survey or live format to assess the needs of
Alzheimer’s disease research in Virginia and explore options
to further support participant recruitment.
2. Direct researchers to data sources for statistics regarding Alzheimer’s
disease and dementia in Virginia so that they can better write research
funding applications.
C. Promote research participation in Virginia.
1. Develop training for gatekeepers (physicians, nurses, office managers,
18
Goal V: Recommendations
and other health professionals) on Alzheimer’s disease and the value of
research participation.
2. Develop incentives, such as care coordination, research partnering and
communications of study results, for health professionals who encourage research participation in the community.
a. Foster university-community partnerships to address community needs and promote mutually beneficial participatory
research opportunities.
b. Post white paper on barriers to research participation and
solicit suggestions to overcome them through the VACAPI
website.
c. Serve as a resource for university institutional review boards
as they develop consistent methods for assessing and approving dementia research studies.
d. Use the VACAPI website to link to additional resources related to research.
3. Direct the Commission and VACAPI to serve as a resource to evaluate
dementia capable services and risk reduction strategies through the development of evidence-based protocols.
a. Evaluate the effectiveness of common methods used to disseminate and translate evidence-based practices, and apply
the results in Virginia.
b. Implement promising practices and programs statewide and
promote the incorporation of evidence-based practices into
existing programs that are merely evidence-informed at the
present time.
19
How We Got Here
The Commonwealth of Virginia's Alzheimer's Disease and Related Disorders Commission was created in 1982. The Commission serves as an advisory board in the executive branch of state government and aims to assist people with Alzheimer's
disease and related disorders and their caregivers.
Under the Code of Virginia § 2.2-720:
The Commission has the following powers and duties:
1. Examine the needs of persons with Alzheimer's
disease and related disorders, as well as the
needs of their caregivers, and ways that state
government can most effectively and efficiently
assist in meeting those needs;
2. Develop and promote strategies to encourage
brain health and reduce cognitive decline;
3. Advise the Governor and General Assembly on
policy, funding, regulatory and other issues related to persons suffering from Alzheimer's disease and related disorders and their caregivers;
4. Develop the Commonwealth's plan for meeting
the needs of patients with Alzheimer's disease
and related disorders and their caregivers, and
advocate for such plan;
5. Submit to the Governor, General Assembly,
and Department, by October 1 of each year, an
electronic report regarding the activities and
recommendations of the Commission, which
shall be posted on the Department's website;
and
Throughout the years the Commission has served
as an advisory vehicle and information hub across
the Commonwealth. In 2009, in conjunction with
other state plan initiatives, the Commission began
reviewing other existing state plans for dementia
with the intent of more formally creating a plan for
action to improve the lives of Virginians affected by
Alzheimer's disease and related disorders. The
Commission conducted Public Listening sessions
in five locations across the Commonwealth. These
sessions were attended by over 90 people and
were followed by extensive review by Commission
members and community stakeholders. Once input
was gathered, the Commission, guided by optimal
aging theory and stress and coping theory, drafted
the plan. The Commission intends that this will be a
living document always responsive to the population we serve.
The Commission partnered with stakeholders
throughout Virginia who contributed to the development and who ultimately will work with the Commission to implement the plan. The Commission
thanks all who contributed to the development of
the plan and provided comments on earlier versions of the plan. The final version reflects these
contributions and specific issues raised have been
referred to the work groups who work to implement
the recommendations in this plan.
6. Establish priorities for programs among state
agencies related to Alzheimer's disease and
related disorders and criteria to evaluate these
programs.
20
Virginia Statistics
In the United States, an estimated 5.4 million people are living with Alzheimer’s disease, and someone develops the disease every 69 seconds. Unless something is done, as many as 16 million Americans will have
Alzheimer’s in 2050 and someone will develop the disease every 33 seconds. In 2010, 14.9 million family
members and friends provided 17 billion hours of unpaid care to those with Alzheimer’s and other dementias
– care valued at $202.6 billion.
For Virginia, these statistics are:
Virginians Aged 65 and Older with Alzheimer’s by Age
YEAR
2000
2010
2020
2025
65-74
7,100
6,600
8,900
10,000
75-84
56,000
59,000
64,000
77,000
85+
41,000
61,000
67,000
71,000
Total
100,000
130,000
140,000
160,000
% Change
from 2000
30%
40%
60%
Percentage Change in Numbers of
Virginians with Alzheimer's Disease
Compared to 2000
60%
40%
30%
2010
Number of
Total Hours of
Total Value of
YEAR
Caregivers
Unpaid Care
Unpaid Care
2008
250,025
215,821,226
2,395,615,613
2009
280,043
318,912,890
3,667,298,236
2010
422,116
480,706,197
5,734,824,927
2020
2025
Cognitive Impairment in Virginia Nursing Home Residents, 2008
None
33%
Severe/
Moderate
41%
Mild/Very
Mild
26%
2008 Virginia Nursing
Home Residents
72,214
21
Resources
ALZHEIMER’S ASSOCIATION CHAPTERS
1-800-272-3900
CENTRAL & WESTERN VIRGINIA
www.alz.org/cwva/
Charlottesville Office
1160 Pepsi Place, Suite 306
Charlottesville, VA 22901
Phone: 1-800-272-3900
Email: [email protected]
Danville Office
308 Craghead St, Suite 104
Danville, VA 24541
Phone: 434-792-3700 Ext. 237
Lynchburg Office
1022 Commerce Street
Lynchburg, VA 24504
Phone: 434-845-8540
Roanoke Office
3959 Electric Rd, Suite 357
Roanoke, VA 24018
Phone: 540-345-7600
GREATER RICHMOND
www.alz.org/grva/
Richmond Office
4600 Cox Road, Suite 130
Glen Allen, VA 23060
Phone: 804-967-2580; Fax: 804-967- 2588
Fredericksburg Office
2217 Princess Anne St., Ste.106-1F
Fredericksburg, VA 22401
Phone: 540-370-0835; Fax: 540-370-4976
Middle Peninsula/Northern Neck Office
6650 Main Street
Gloucester, VA 23061
Phone: 804-695-9382; Fax: 804-695-9278
Tri-Cities Office
201 Temple Ave., Suite E
Colonial Heights,VA23834
Phone: 804-526-2359; Fax: 804-526-4128
NATIONAL CAPITAL AREA
www.alz.org/nca/
Northern Virginia Office
3701 Pender Drive, Suite 400
Fairfax, VA 22030
Phone: 703-359-4440
SOUTHEASTERN VIRGINIA
www.alz.org/seva/
Southeastern Virginia Office
6350 Center Drive, Suite 102
Norfolk, VA 23502
Phone: 1-800-272-3900
Eastern Shore Branch Office
5432 Bayside Road
Exmore, VA 23350
Phone: 1-800-272-3900
Williamsburg Branch Office
213 McLaws Circle, Suite 2-B
Williamsburg, VA 23185
Phone: 1-800-272-3900
AREA AGENCIES ON AGING
1—Mountain Empire Older Citizens, Inc.
P.O. Box 888
Big Stone Gap, VA 24219-0888
Marilyn Maxwell, Executive Director
Phone: 276-523-4202 or 1-800-252-6362
FAX: 276-523-4208
Email: [email protected]
Counties of Lee, Wise, & Scott. City of Norton
2—Appalachian Agency for Senior Citizens,
Inc.
P.O. Box 765
Cedar Bluff, VA 24609-0765
Regina Sayers, Executive Director
Phone: 276-964-4915 or 1-800-656-2272
FAX: 276-963-0130
Email: [email protected]
Counties of Dickenson, Buchanan, Tazewell, &
Russell.
3—District Three Governmental Cooperative
4453 Lee Highway
Marion, VA 24354-4270
Mike Guy, Executive Director
Phone: 276-783-8150 or 1-800-541-0933
FAX: 276-783-3003
Email: [email protected]
Counties of Washington, Smyth, Wythe, Bland,
Grayson, & Carroll. Cities of Galax & Brisol
4—New River Valley Agency on Aging
141 East Main Street, Suite 500
Pulaski, VA 24301
Tina King, Executive Director
Phone: 540-980-7720 FAX: 540-980-7724
Email: [email protected]
Counties of Giles, Floyd, Pulaski and Montgomery, City of Radford
5—LOA-Area Agency on Aging, Inc.
P.O. Box 14205
Roanoke, Virginia 24038-4205
Susan Williams, Executive Director
Phone: 540-345-0451 / Fax: 540-981-1487
Email: [email protected]
Counties of Roanoke, Craig, Botetourt, & Alleghany. Cities of Salem, Roanoke, Clifton Forge,
& Covington
6—Valley Program for Aging Services, Inc.
P.O. Box 14205
Waynesboro, VA 22980-0603
Paul Lavigne, Executive Director
Phone: 540-949-7141or 1-800-868-8727
FAX: 540-949-7143
Email: [email protected]
Counties of Rockingham, Rockbridge, Augusta,
Highland, & Bath. Cities of Buena Vista, Lexington, Waynesboro, & Harrisonburg
7—Shenandoah Area Agency on Aging, Inc.
207 Mosby Lane
Front Royal, VA 22630-2611
Cindy Palmer, Director
Phone: 540-635-7141 or 1-800-883-4122
FAX: 540-636-7810
Email: [email protected]
Counties of Page, Shenandoah, Warren, Clarke,
& Frederick. City of Winchester
8A—Alexandria Office of Aging & Adult
Services
2525 Mount Vernon Avenue
Alexandria, VA 22301-1159
MaryAnn Griffin - Director
Phone: 703.746.5692; Fax: 703.746.5975
Email: [email protected]
Website: www.AlexandriaVA.gov
City of Alexandria
8B—Arlington Agency on Aging
2100 Washington Boulevard, 4th Floor
Arlington, VA 22204
Terri Lynch, Director
Phone: 703-228-1700 FAX: 703-228-1174
TTY: 703-228-1788
Email: [email protected]
County of Arlington
8C—Fairfax Area Agency on Aging
12011 Government Center Parkway, Suite 720
Fairfax, VA 22035
Sharon Lynn, Director
Phone: 703-324-5411 FAX: 703-449-9552
Email: [email protected]
County of Fairfax, Cities of Fairfax and Falls
Church
8D—Loudoun County Area Agency on Aging
215 Depot Court, SE, Suite 231 78 A
Leesburg, VA 20175
Lynn A. Reid, Administrator
Phone: 703-777-0257 FAX: 703-771-5161
Email: [email protected]
County of Loudoun
8E—Prince William Area Agency on Aging
5 County Complex, Suite 240
Woodbridge, VA 22192
Courtney Tierney, Director
Phone: 703-792-6400 FAX: 703-792-4734
Email: [email protected]
County of Prince William. Cities of Manassas,
Manassas Park, & Woodbridge
22
Resources
9—Rappahannock-Rapidan Community
Services
P.O. Box 1568
Culpeper, VA 22701
Ray Parks, Director of Aging & Transp Services
Phone: 540-825-3100 FAX: 540-825-6245
Email: [email protected]
Counties of Culpeper, Fauquier, Madison, Orange, & Rappahannock
10—Jefferson Area Board for Aging
674 Hillsdale Drive, Suite 9
Charlottesville, VA 22901
Gordon Walker, CEO
Phone: 434-817-5222; FAX: 434-817-5230
Email: [email protected]
Counties of Nelson, Albemarle, Louisa, Fluvanna, & Greene. City of Charlottesville
11—Central Virginia Area Agency on Aging,
Inc.
501 12th Street, Suite A
Lynchburg, VA 24504
Deborah Silverman, Executive Director
Phone: 434-385-9070; FAX: 434-385-9209
Email: [email protected]
Counties of Bedford, Amherst, Campbell, &
Appomattox. Cities of Bedford & Lynchburg
12—Southern Area Agency on Aging, Inc.
204 Cleveland Avenue
Martinsville, VA 24112-4228
Teresa Carter, Executive Director
Phone: 276-632-6442 FAX: 276-632-6252
Email: [email protected]
Counties of Patrick Henry, Franklin, & Pittsylvania. Cities of Martinsville & Danville
13—Lake Country Area Agency on Aging
1105 West Danville St
South Hill, Virginia 23970-3501
Gwen Hinzman, President/CEO
Phone: 434-447-7661 FAX: 434-447-4074
Email: [email protected]
Counties of Halifax, Mecklenburg, & Brunswick.
City of South Boston
14—Piedmont Senior Resources Area
Agency on Aging, Inc.
P.O. Box 398
Burkeville, Virginia 23922-0398
Ronald Dunn, Executive Director
Phone: 434-767-5588 or 800-995-6918
FAX: 434-767-2529
Email: [email protected]
Counties of Nottoway, Prince Edward, Charlotte, Lunenburg, Cumberland, Buckingham, &
Amelia
15—Senior Connections
24 East Cary Street
Richmond, VA 23219
Thelma Bland Watson, Executive Director
Phone: 804-343-3000 or 800-995-6918
FAX: 804-649-2258
Email: [email protected]
Counties of Charles City, Henrico, Goochland,
Powhatan, Chesterfield, Hanover, & New Kent.
City of Richmond
21—Peninsula Agency on Aging, Inc.
739 Thimble Shoals Boulevard
Building 1000, Suite 1006
Newport News, VA 23606
William Massey, CEO
Phone: 757-873-0541 FAX: 757-872-1437
Email: [email protected]
Counties of James City & York. Cities of Williamsburg Newport News, Hampton, &
Poquoson
16—Rappahannock Area Agency on Aging,
Inc.
171 Warrenton Road
Fredericksburg, VA 22405
Jim Schaefer, Executive Director
Phone: 540-371-3375 or 800-262-4012
FAX: 540-371-3384
Email: [email protected]
Counties of Caroline, Spotsylvania, Stafford, &
King George. City of Fredericksburg
22—Eastern Shore Area Agency on AgingCommunity Action Agency, Inc.
P.O. Box 415
Belle Haven, Virginia 23306
Diane Musso, CEO
Phone: 757-442-9652 or 800-452-5977
FAX: 757-442-9303
Email: [email protected]
Counties of Accomack & Northampton
17/18—Bay Aging
P.O. Box 610
Urbanna, VA 23175
Kathy Vesley, President
Phone: 804-758-2386 FAX: 804-758-5773
Email: [email protected]
Counties of Westmoreland, Northumberland,
Richmond, Lancaster, Essex, Middlesex,
Mathews, King & Queen. King William, &
Gloucester
19—Crater District Area Agency On Aging
23 Seyler Drive
Petersburg, VA 23805
David Sadowski, Executive Director
Phone: 804-732-7020 FAX: 804-732-7232
Email: [email protected]
Counties of Dinwiddie, Sussex, Greensville,
Surry, & Prince George. Cities of Petersburg,
Hopewell, Emporia, & Colonial Heights
20—Senior Services of Southeastern
Virginia
5 Interstate Corporate Center
6350 Center Drive, Suite 101
Norfolk, Virginia 23502
John Skirven, Executive Director
Phone: 757-461-9481 FAX: 757-461-1068
Email: [email protected]
Counties of Southampton & Isle of Wight. Cities
of Franklin, Suffolk, Portsmouth, Chesapeake,
Virginia Beach, & Norfolk
CENTER FOR EXCELLENCE IN AGING AND
GERIATRIC HEALTH
www.excellenceinaging.org/
EASTERN VIRGINIA MEDICAL SCHOOL
Glennon Center for Geriatrics & Gerontology
www.evms.edu/evms-centers-of-excellence/
glennan-center-for-geriatrics-gerontology.html
JAMES MADISON UNIVERSITY
Caregivers Community Network
www.socwork.jmu.edu/Caregivers/
LYNCHBURG COLLEGE
Beard Center on Aging
www.lynchburg.edu/beard
UNIVERSITY OF VIRGINIA
Memory Commons
www.memorycommons.org
Memory Disorders Clinic
500 Ray C. Hunt Drive
Charlottesville, VA 22943
Tel: 434-924-8668; Research: 434-243-5898
VIRGINIA ALZHEIMER’S COMMISSION
ALZPOSSIBLE INITIATIVE (VACAPI)
www.alzpossible.org
VIRGINIA CAREGIVER COALITION
Ellen M. Nau, Program Coordinator
Virginia Department for the Aging
Phone: 804-662-9340
VIRGINIA COMMONWEALTH UNIVERSITY
Department of Gerontology
www.sahp.vcu.edu/gerontology/
Parkinson’s Disease Center
www.parkinsons.vcu.edu
Virginia Center on Aging
www.vcu.edu/vcoa/
23
Resources
VIRGINIA DEPARTMENT FOR THE AGING
1610 Forest Avenue, Suite 100
Richmond, VA 23229
Phone: 804-662-9333
Toll Free 1-800-552-3402 FAX: 804-662-9354
www.vda.virginia.gov
VIRGINIA EASY ACCESS
easyaccess.virginia.gov/
VIRGINIA SENIORNAVIGATOR
www.seniornavigator.com/
VIRGINIA TECH
Center for Gerontology
www.gerontology.vt.edu/
24
Glossary
AG - Auxiliary Grant
An Auxiliary Grant is an income supplement for individuals who receive Supplemental
Security Income (SSI) and certain other aged, blind, or disabled individuals who reside in
a licensed assisted living facility (ALF) or an approved adult foster care (AFC) home. An
AG payment is issued to an individual monthly, to be used with a designated amount of
their monthly income to pay an ALF or AFC a maximum monthly rate. This rate is determined by the Virginia General Assembly and is adjusted periodically. The AG Program is
80 percent state funded and 20 percent locally funded and is administered by the Virginia Department of Social Services. It is only for individuals who reside in an ALF licensed
by the Virginia Department of Social Services' Division of Licensing Programs or in an
AFC home approved by their local department of social services.
Assisted Living
Assisted living is a licensed residential setting that provides 24-hour care and supervision to seniors and people with disabilities who need assistance, but do not require
around the clock nursing care. Assisted living facilities provide assistance with Activities
of Daily Living (ADLs), medication management, social activities, housekeeping, meals,
and may offer dementia care programs.
ALF - Assisted Living
Facility
Assisted Living Facility (ALF) means any congregate residential setting that provides or
coordinates personal and health care services, 24-hour supervision, and assistance
(scheduled and unscheduled) for the maintenance or care of four or more adults who are
aged, infirm or disabled and who are cared for in a primarily residential setting, Included
in this definition are any two or more places, establishments or institutions owned or operated by a single entity and providing maintenance or care to a combined total of four or
more aged, infirm or disabled adults. Maintenance or care means the protection, general
supervision and oversight of the physical and mental well-being of an aged, infirm or
disabled individual.
Adult Protective Services investigates reports of abuse, neglect, and exploitation of
adults 60 years of age or older and incapacitated adults age 18 or older. If protective
services are needed and accepted by the individual, local Adult Protective Services social workers may arrange for a wide variety of health, housing, social and legal services
to stop the mistreatment or prevent further mistreatment. Services offered may include
home-based care, transportation, adult day services, adult foster care, nutrition services
and legal intervention in order to protect the adult. Services may also be arranged for
individuals in emergency situations who lack the capacity to consent to services.
APS - Adult Protective
Services
BRFSS – Behavioral
Risk Factor
Surveillance System
The Virginia BRFSS is an annual survey of Virginia’s adult population about individual
behaviors that relate to chronic disease and injury. The BRFSS is the primary source of
state-based information on health risk behaviors among adult populations.
Caregiver
The term caregiver refers to anyone who provides assistance to someone else who is, in
some degree, incapacitated and needs help. Informal caregiver and family caregiver are
terms that refer to unpaid individuals such as family members, friends and neighbors
who provide care. These individuals can be primary or secondary caregivers, full time or
part time, and can live with the person being cared for or live separately.
Culture Change
Culture change is the common name given to the national movement for the transformation of older adult services, based on person-directed values and practices where the
voices of elders and those working with them are considered and respected. Core person-directed values are choice, dignity, respect, self-determination and purposeful living.
25
Glossary (cont.)
Dementia Capable
Dementia capable indicates the attribute of being tailor-made to the unique needs of persons with dementia stemming from conditions such as Alzheimer’s disease and related
disorders, and their caregivers.
EDCD Waiver
The Elderly or Disabled Consumer Direction (EDCD) Waiver serves the elderly and persons of all ages with disabilities. The individual may receive this service through a service
provider or through consumer direction in which he or she directs his or her own care, or
a parent, spouse, adult child or other responsible adult can direct care on behalf of the
individual. Services include Adult Day Services, Medication Monitoring, Personal Care –
Agency and Consumer-Directed, Personal Emergency Response System (PERS), Respite Care – Agency and Consumer-Directed, Transition Coordination, Transitional Services.
Hospice care is designed to give supportive care to people in the final phase of a terminal
illness and focus on comfort and quality of life, rather than cure. The goal is to enable patients to be comfortable and free of pain, so that they live each day as fully as possible.
Aggressive methods of pain control may be used. Hospice programs generally are homebased, but they sometimes provide services away from home–in freestanding facilities, in
nursing homes, or within hospitals. The philosophy of hospice is to provide support for the
patient’s emotional, social, and spiritual needs as well as medical symptoms as part of
treating the whole person.
Hospice Care
Long-term care
Long-term care encompasses a variety of services that includes medical and non-medical
care to people who have a chronic illness or disability. Long-term care helps meet health
or personal needs. Most long-term care is to assist people with support services such as
activities of daily living like dressing, bathing, and using the bathroom. Long-term care
can be provided at home, in the community, in assisted living or in nursing homes. It is
important to remember that you may need longterm care at any age.
Medicaid
Medicaid is health insurance available to certain people and families who have limited
income and resources. Eligibility may also depend on how old you are and whether you
are pregnant, whether you are blind or have other disabilities, and whether you are a U.S.
citizen or a lawfully admitted immigrant. People with Medicaid may also get coverage for
services such as nursing home care and waiver services.
Medicaid Waivers
Medicaid Waivers were developed to encourage people with disabilities and the elderly to
access services in their homes and communities. Medicaid is a joint federal-state program. Medicaid Waivers provide funding to serve people who are eligible for long-term
care in institutions such as hospitals, nursing facilities, and intermediate-care facilities.
Through Medicaid Waivers, states can “waive” certain requirements including the requirement that individuals live in institutions in order to receive Medicaid funding.
(MDC) - Memory
Disorders Clinic
In 1996, a dedicated Memory Disorders Clinic was established at the University of Virginia (UVA) Health System. The clinic pooled appropriate expertise within the UVA Department of Neurology. This expertise included (but was not limited to) two cognitive disorders sub-specialist neurologists, a neuropsychologist, a dedicated nurse coordinator, and
social worker. Multiple members of the group were experienced in the conduct of AD
drug trials. Since its inception, the UVA MDC has fulfilled essential clinical, educational,
and investigational services to the Commonwealth. Physicians in internal medicine, psychiatry, and neurology residency/fellowship training programs regularly rotate through the
clinic as part of their post-graduate medical training. Clinic staff is regularly recruited for
continuing medical education and patient education events. Because of its large patient
base and professional resources, the MDC has been asked to participate in numerous
industry and federally sponsored AD and vascular dementia drug trials. Here in the Commonwealth, it serves as the principle gateway of dementing individuals to experimental
therapies.
26
Glossary (cont.)
Olmstead v. LC
The United States Supreme Court decided in an Opinion issued on June 22, 1999 that a
State is required under Title II of the Americans with Disabilities Act (ADA), 42 U.S.C. §
12132, to provide community-based treatment for persons with mental disabilities 1) when
the State's treatment professionals determine that such placement is appropriate, 2) the
affected persons do not oppose such placement, and 3) the placement can be reasonably
accommodated, taking into account the resources available to the State and the needs of
others with disabilities. The Court further stated that nothing in the ADA or its implementing
regulations requires community placements for persons unable to handle or benefit from
community settings.
Optimal Aging
Theory
PACE
Optimal aging is the capacity to function across many domains—physical, functional, cognitive, emotional, social, and spiritual – to one’s satisfaction and in spite of one’s medical conditions
The Program of All-Inclusive Care for the Elderly (PACE) provides the following services:
Adult Day Care, Home Health Care, Hospital Patient Care, Meals, Nursing Facility Care,
Nutritional Counseling, Outpatient Medical Services, Personal Care, Prescribed Medications, Primary/Specialty Care, Nursing, Respite Care, Social Services, Transportation and
All other Medicare and Medicaid Services. Recipients must meet the following criteria: at
least 55 years of age, and reside in a PACE provider area, and be eligible for Nursing
Home Care, and be screened and assessed by the PACE team, and have a safe service
plan and have an income equal to or less than 300% of Social Security Income.
Person Centered
Care
Person Centered Care is personal attention to individuals in the Long Term Care system. It
empowers staff to be a resident advocate and honors each person’s dignity, rights, selfrespect, and independence. It allows individuals to make choices, and requires staff to respect the wishes of the individual receiving services. It requires involving them in decision
making process, giving them the control of their life.
Respite Care
Respite care is the provision of short-term, temporary relief to those who are caring for family members who might otherwise require permanent placement in a facility outside the
home. Respite programs provide planned short-term and time-limited breaks for families
and other unpaid care givers of children with a developmental delay and adults with an intellectual disability in order to support and maintain the primary care giving relationship.
Skilled Nursing
Facility
Skilled nursing facilities (also known as nursing homes) provide housing, meals, skilled and
intensive medical care, personal care, social services, and social activities to people who
have physical or behavioral conditions that prevent them from living alone. Medicare and
private insurance typically cover short-term nursing home stays for skilled care needs, but
they do not cover long-term stays.
Stress and Coping
Theory
VACAPI - Virginia
Alzheimer’s
Commission
AlzPossible
Initiative
The Stress and Coping Theory asserts that adaptive behavior occurs primarily in response
to stress, defined as problems or hardships that threaten an individual's well-being.
In 2004, the Virginia Alzheimer’s Disease and Related Disorders Commission created a
statewide “Virtual Alzheimer’s Disease Center.” To date, this work has received financial
support from a federal grant obtained by the Virginia Department of Aging (The Alzheimer’s
Disease Demonstration Grants to States Program). In 2006, however, the Commission has
refined this effort so that over the long term it will create a centralized mechanism for ascertaining patient needs and mounting coordinated responses to those needs before they
reach crisis proportions. This effort has been formally titled the “Virginia Alzheimer’s Disease AlzPossible Initiative” (VACAPI). VACAPI is established as a virtual center or a center
without walls. The virtual center concept is a hybrid organization designed to leverage intellectual assets, rather than physical assets, to attain its corporate objectives.
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www.alzpossible.org
Cover photographs courtesy of Ray Moore and the Mountain Empire Older Citizens, Inc.
From top left, clockwise:
VINADA BRICKEY AND HUSBAND, MACK BRICKEY, WEBER CITY —“I am grateful for each day with my wife and would not
trade this experience for anything. There could be no greater love than my love for her.” —Mack Brickey
MARY SCHAUER AND MOTHER, INA DUFF, PENNINGTON GAP —“My mother is my best friend.” —Mary Schauer
ALBERTA MITCHELL AND MOTHER, ILLINOISE MITCHELL, BIG STONE GAP — “This experience has afforded me an
opportunity to do for my mother and give back to her for all she has done for me in my life. It makes me feel so blessed to have
her for a mother, she is so precious to me!” —Alberta Mitchell
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